Official blog of the American Civil Liberties Union of Pennsylvania

Main menu

Post navigation

"Why didn’t I know that I was tested for HIV?"

Among the rush of bills being considered by the state legislature before the pending budget deadline- which is when it flows downhill, if you know what I mean- is Senate Bill 260. This bill eviscerates privacy protections that currently exist in state law on HIV testing.

Under current law, a patient must give written informed consent before being tested for HIV. In common language, that means that a patient gets information about HIV and about the test and signs off on taking the test. Sounds about right, right?

Well, a group of doctors has been pushing to get this requirement deleted from law, and that’s why we’re dealing with SB 260. The docs want the current requirement replaced with “documented informed consent,” in which the doctor asserts that the patient consented, or opt-out testing, in which the patient must sign to get out of the test. Why do they want this? That depends upon whom you ask. They say they want more people to get tested for HIV. Everyone wants that. But there’s nothing in current law that prohibits doctors from encouraging their patients to take an HIV test. If the doctors want universal testing, they should offer HIV tests to everyone and not offer tests only when they think a patient’s lifestyle warrants it.

The cynics among us (me included) believe that the doctors want this portion of the law deleted because it’s less work for them. Get rid of that pesky pre-test counseling and written informed consent and they can jam testing on their patients.

Some states have laws requiring pregnant women to opt out of HIV testing, and surveys indicate that some women feel pressured into taking the test. Patients who were younger, unemployed, and who did not have a regular healthcare provider were more likely to feel pressured, according to the research. And in some cases, patients did not even know that they have been tested.

Why does this matter? It matters because, unfortunately, HIV still carries a stigma. A 2009 Kaiser Family Foundation study found that 23 percent of Americans would not be comfortable with an HIV-positive roommate, 35 percent of parents would not be comfortable with an HIV-positive teacher teaching their kids, and a slim majority of 51 percent are not comfortable with an HIV-positive person doing food preparation.

It matters because an HIV diagnosis requires lifelong care. Pressuring a patient into a test or even tricking them into a test is no way to start that care.

SB 260 is bad news for patients. It opens the door to paternalistic care by doctors and disempowers patients. We’ve come a long way on HIV. But we still have a long way to go. Patients are better protected by current state law and not by SB 260. There’s no need to mess with a good thing.